{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,17]],"date-time":"2026-07-17T17:38:14Z","timestamp":1784309894835,"version":"3.55.0"},"reference-count":33,"publisher":"Informa UK Limited","license":[{"start":{"date-parts":[[2025,6,1]],"date-time":"2025-06-01T00:00:00Z","timestamp":1748736000000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/3.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["CLEP"],"DOI":"10.2147\/clep.s526203","type":"journal-article","created":{"date-parts":[[2025,6,24]],"date-time":"2025-06-24T05:20:11Z","timestamp":1750742411000},"page":"567-579","source":"Crossref","is-referenced-by-count":2,"title":["The Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER): Design and Initial Baseline Report"],"prefix":"10.2147","volume":"Volume 17","author":[{"given":"Noriana","family":"Jakopin","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9227-3668","authenticated-orcid":true,"given":"Samantha","family":"Lanjewar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-8006-5529","authenticated-orcid":true,"given":"Amanda","family":"Garzon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul","family":"Gross","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard","family":"Holubkov","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Abhay","family":"Moghekar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jason","family":"Preston","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margaret","family":"Romanoski","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chevis","family":"Shannon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mandeep","family":"Tamber","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tessa","family":"Van der Willigen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa","family":"Sloan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8858-9937","authenticated-orcid":true,"given":"Monica","family":"Chau","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jenna","family":"Koschnitzky","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"301","published-online":{"date-parts":[[2025,6]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"353","DOI":"10.3171\/2020.4.PEDS19660","volume":"26","author":"Zimmerman","year":"2020","journal-title":"J Neurosurg Pediatr"},{"key":"ref2","doi-asserted-by":"publisher","first-page":"e66","DOI":"10.1016\/j.wneu.2020.12.008","volume":"148","author":"Zimmerman","year":"2021","journal-title":"World Neurosurg"},{"key":"ref3","doi-asserted-by":"publisher","first-page":"72","DOI":"10.1227\/00006123-199101000-00012","volume":"28","author":"Abbott","year":"1991","journal-title":"Neurosurgery"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"337","DOI":"10.1002\/ana.10453","volume":"53","author":"Del Bigio","year":"2003","journal-title":"Ann Neurol"},{"key":"ref5","doi-asserted-by":"publisher","first-page":"165","DOI":"10.1155\/2009\/791491","volume":"21","author":"Kito","year":"2009","journal-title":"Behav Neurol"},{"key":"ref6","doi-asserted-by":"publisher","first-page":"245","DOI":"10.3171\/2021.8.PEDS21146","volume":"29","author":"Riva-Cambrin","year":"2022","journal-title":"J Neurosurg Pediatr"},{"key":"ref7","doi-asserted-by":"publisher","first-page":"887","DOI":"10.3171\/2021.3.JNS203424","volume":"136","author":"Zwimpfer","year":"2022","journal-title":"J Neurosurg"},{"key":"ref8","doi-asserted-by":"publisher","first-page":"455","DOI":"10.1016\/j.clineuro.2008.02.003","volume":"110","author":"Ravdin","year":"2008","journal-title":"Clin Neurol Neurosurg"},{"key":"ref9","doi-asserted-by":"publisher","first-page":"294","DOI":"10.1097\/00006123-199808000-00068","volume":"43","author":"Drake","year":"1998","journal-title":"Neurosurgery"},{"key":"ref10","doi-asserted-by":"publisher","first-page":"131","DOI":"10.3171\/PED\/2008\/1\/2\/131","volume":"1","author":"Simon","year":"2008","journal-title":"J Neurosurg Pediatr"},{"key":"ref11","doi-asserted-by":"crossref","first-page":"1","DOI":"10.3171\/2024.7.JNS2440","author":"Ravindra","year":"2024","journal-title":"J Neurosurg Pediatr"},{"key":"ref12","doi-asserted-by":"publisher","first-page":"1773","DOI":"10.3171\/2019.2.JNS183538","volume":"132","author":"Williams","year":"2020","journal-title":"J Neurosurg"},{"key":"ref13","unstructured":"Institute KK. Interactive autism network (IAN) research project. Available from: https:\/\/www.kennedykrieger.org\/stories\/interactive-autism-network-ian. Accessed July 24, 2023."},{"key":"ref14","doi-asserted-by":"publisher","first-page":"1173","DOI":"10.1513\/AnnalsATS.201511-781OC","volume":"13","author":"Knapp","year":"2016","journal-title":"Ann Am Thorac Soc"},{"key":"ref15","unstructured":"(NINDS) NIoNDaS. User manual for the quality of life in neurological disorders (Neuro-QoL) measures. Health NIo, ed. Vol 2.0. neuroqol.org: National Institutes of Health; 2015."},{"key":"ref16","doi-asserted-by":"publisher","first-page":"S3","DOI":"10.1097\/01.mlr.0000258615.42478.55","volume":"45","author":"Cella","year":"2007","journal-title":"Med Care"},{"key":"ref17","doi-asserted-by":"publisher","first-page":"328","DOI":"10.3109\/07853890109002086","volume":"33","author":"Sintonen","year":"2001","journal-title":"Ann Med"},{"key":"ref18","doi-asserted-by":"publisher","first-page":"323","DOI":"10.1093\/geronj\/37.3.323","volume":"37","author":"Pfeffer","year":"1982","journal-title":"J Gerontol"},{"key":"ref19","doi-asserted-by":"publisher","first-page":"721","DOI":"10.1111\/j.1532-5415.1983.tb03391.x","volume":"31","author":"Katz","year":"1983","journal-title":"J Am Geriatr Soc"},{"key":"ref20","doi-asserted-by":"publisher","first-page":"914","DOI":"10.1001\/jama.1963.03060120024016","volume":"185","author":"Katz","year":"1963","journal-title":"JAMA"},{"key":"ref21","first-page":"315","volume":"18","author":"Graf","year":"2009","journal-title":"Medsurg Nurs"},{"key":"ref22","unstructured":"Varni JW. The PedsQLTM, measurement model for the pediatric quality of life inventoryTM. PedsQL TM. Available from: https:\/\/www.pedsql.org. Accessed July 24, 2023."},{"key":"ref23","doi-asserted-by":"publisher","first-page":"134","DOI":"10.3171\/ped.2004.101.2.0134","volume":"101","author":"Kulkarni","year":"2004","journal-title":"J Neurosurg"},{"key":"ref24","doi-asserted-by":"publisher","first-page":"103208","DOI":"10.1016\/j.jbi.2019.103208","volume":"95","author":"Harris","year":"2019","journal-title":"J Biomed Inform"},{"key":"ref25","doi-asserted-by":"publisher","first-page":"117152","DOI":"10.1016\/j.jns.2020.117152","volume":"418","author":"Ghaffari-Rafi","year":"2020","journal-title":"J Neurol Sci"},{"key":"ref26","doi-asserted-by":"publisher","first-page":"502","DOI":"10.3171\/2022.10.JNS22330","volume":"139","author":"Koschnitzky","year":"2023","journal-title":"J Neurosurg"},{"key":"ref27","doi-asserted-by":"publisher","first-page":"e00088","DOI":"10.1227\/neuprac.0000000000000088","volume":"5","author":"Larrew","year":"2024","journal-title":"Neurosurg Pract"},{"key":"ref28","doi-asserted-by":"publisher","first-page":"e29","DOI":"10.1016\/j.wneu.2021.09.071","volume":"157","author":"Valsecchi","year":"2022","journal-title":"World Neurosurg"},{"key":"ref29","doi-asserted-by":"publisher","first-page":"623","DOI":"10.1111\/ane.13306","volume":"142","author":"Kamohara","year":"2020","journal-title":"Acta Neurol Scand"},{"key":"ref30","doi-asserted-by":"publisher","first-page":"145","DOI":"10.3171\/2017.8.JNS17399","volume":"130","author":"Anderson","year":"2019","journal-title":"J Neurosurg"},{"key":"ref31","doi-asserted-by":"publisher","first-page":"e0217705","DOI":"10.1371\/journal.pone.0217705","volume":"14","author":"Andersson","year":"2019","journal-title":"PLoS One"},{"key":"ref32","doi-asserted-by":"publisher","first-page":"76","DOI":"10.1186\/s13023-024-03071-7","volume":"19","author":"Cattinari","year":"2024","journal-title":"Orphanet J Rare Dis"},{"key":"ref33","doi-asserted-by":"publisher","first-page":"492","DOI":"10.3171\/2022.10.JNS22753","volume":"139","author":"Jakopin","year":"2023","journal-title":"J Neurosurg"}],"container-title":["Clinical Epidemiology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.dovepress.com\/article\/download\/104167","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.dovepress.com\/article\/download\/104167","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,6,24]],"date-time":"2025-06-24T05:20:12Z","timestamp":1750742412000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.dovepress.com\/the-hydrocephalus-association-patient-powered-interactive-engagement-r-peer-reviewed-fulltext-article-CLEP"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6]]},"references-count":33,"URL":"https:\/\/doi.org\/10.2147\/clep.s526203","relation":{"has-preprint":[{"id-type":"doi","id":"10.1101\/2024.10.11.24315348","asserted-by":"object"}]},"ISSN":["1179-1349"],"issn-type":[{"value":"1179-1349","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,6]]}}}